Tuesday, September 23, 2008

As many of you know, I went for years without a diagnosis for my debilitating illness despite visiting as many doctors as I could find (over 30 in fact!). I was very excited to find that the NIH has finally set up a program for patients languishing under the "undiagnosed" category. This program should be a huge help to many people and, hopefully, keep others from going as long as many of us do without a diagnosis. I have posted a copy of the information about the Undiagnosed Diseases Program below. If anyone knows someone or has a loved one with an undiagnosed disease, please share this program with them to see if they might be able to qualify. In some cases, the NIH will actually cover all the costs of travel to and testing at the NIH!! Very exciting news indeed.

"Undiagnosed Diseases Program

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

To provide answers to patients with mysterious conditions that have long eluded diagnosis

To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.

For more information please call (866) 444-8806

Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center."

Why am I doing this?

I have been severely ill for 8 years. I was an active, healthy 26 year old emergency veterinarian loving life and my job. Everything crashed to a halt after a cat bite landed me in the hospital for a few days on IV antibiotics. Severe dizziness, fatigue, pain, and fainting were soon to follow. I had to take medical leave 3 months after I first became ill and was never able to work again.

It took more than 30 doctors, 2 years, and a trip to the Mayo clinic in Minnesota to finally get diagnosed with Postural Orthostatic Tachycardia Syndrome, or "POTS", a type of dysautonomia. I am still severely disabled, but fighting tooth and nail to get better every day. I want this blog to be a resource for others who have chronic "mystery" diagnoses or other chronic disorders that need help organizing their life again.

Bear with me on this blog because I am ill and will not be able to post as regularly as a "normal" person can!